Thud . . . scrape . . . Oh, sorry, just getting my soap box back into place. The iron deficiency anemia has made me tired enough that I haven’t had the energy to climb back up on it for a while. But an article I recently read on AOL
by Associated Press reporter Matthew Perrone has really ticked me off. It isn’t the total content – it’s the “slant” and the provocative language that is firing me up enough to get back up on the soap box.
For those who have never read any of my posts prior to this, I am a 56 year old woman who has had fibromyalgia since I was 13 year old. That’s 43 years of trying to understand, live with and cope with a condition that is not much better understood now than it was in 1965. At least it has a name now. When I was young, there was no name. Since it was primarily women who complained of the symptoms, it was “all in your head” because you were a “histrionic female.” There was nothing but aspirin to help you cope with the pain. Today the condition is recognized and there are a few more options to help us cope with the pain.
One thing that hasn’t changed much is the fact that most people cannot empathize with you when you have pain all the time, even when you do the most outwardly benign activities. How can a flare-up of pain be caused by sitting and watching TV? We don’t know why it happens, but those of us with fibromyalgia will tell you that it does happen. We can’t do anything for too long, including sitting in one place, before we start to hurt. If we don’t or can’t move when we first feel that discomfort, there will be even worse pain to bear.
If you’ve read any of my posts, you have seen that I have been critical of the drug makers for their advertising campaigns in the past year. But it wasn’t because they were trying to “make fibromyalgia a legitimate medical condition” or because they were informing the public about the condition. Indeed, public education is helpful.
My “beef” has been the portrayal of the fibromyalgia sufferers and the suggestion that the drugs can make a fibromyalgia sufferer’s life “normal” again. I have especially complained about the advertising for the drug Lyrica. I have stated that I spoke about it with my doctor, who called Lyrica a drug in search of a disease. Lyrica has not been approved for use to treat fibromyalgia. He does not use it for his fibromyalgia patients. He does use Cymbalta, which is FDA approved for fibromyalgia treatment, with some of his patients.
So what is my “beef” about. Read the article, so you can see what I’m referring to; then I’ll continue . . . .
Drugmakers’ Push Boosts ‘Murky’ Ailment
By MATTHEW PERRONE
posted: 15 DAYS 21 HOURS AGO
WASHINGTON (Feb. 9) – Two drugmakers spent hundreds of millions of dollars last year to raise awareness of a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions — including whether it’s a real disease at all.
Key components of the industry-funded buzz over the pain-and-fatigue ailment fibromyalgia are grants — more than $6 million donated by drugmakers Eli Lilly and Pfizer in the first three quarters of 2008 — to nonprofit groups for medical conferences and educational campaigns, an Associated Press analysis found. That’s more than they gave for more accepted ailments such as diabetes and Alzheimer’s. Among grants tied to specific diseases, fibromyalgia ranked third for each company, behind only cancer and AIDS for Pfizer and cancer and depression for Lilly.
Fibromyalgia draws skepticism for several reasons. The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments. Experts don’t doubt the patients are in pain. They differ on what to call it and how to treat it.
Many doctors and patients say the drugmakers are educating the medical establishment about a misunderstood illness, much as they did with depression in the 1980s. Those with fibromyalgia have often had to fight perceptions that they are hypochondriacs, or even faking their pain.
But critics say the companies are hyping fibromyalgia along with their treatments, and that the grantmaking is a textbook example of how drugmakers unduly influence doctors and patients. “I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs,” said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.
Whatever the motive, the push has paid off. Between the first quarter of 2007 and the fourth quarter of 2008, sales rose from $395 million to $702 million for Pfizer’s Lyrica, and $442 million to $721 million for Lilly’s Cymbalta. Cymbalta, an antidepressant, won Food and Drug Administration approval as a treatment for fibromyalgia in June. Lyrica, originally approved for epileptic seizures, was approved for fibromyalgia a year earlier.
Drugmakers respond to skepticism by pointing out that fibromyalgia is recognized by medical societies, including the American College of Rheumatology. “I think what we’re seeing here is just the evolution of greater awareness about a condition that has generally been neglected or poorly managed,” said Steve Romano, a Pfizer vice president who oversees its neuroscience division. “And it’s mainly being facilitated by the fact the FDA has now approved effective compounds.”
The FDA approved the drugs because they’ve been shown to reduce pain in fibromyalgia patients, though it’s not clear how. Some patients say the drugs can help, but the side effects include nausea, weight gain and drowsiness. Helen Arellanes of Los Angeles was diagnosed with fibromyalgia in September 2007 and later left her job to go on disability. She takes five medications for pain, including Lyrica and Cymbalta. “I call it my fibromyalgia fog, because I’m so medicated I go through the day feeling like I’m not really there,” Arellanes said. “But if for some reason I miss a dose of medication, I’m in so much pain.” A single mother of three, Arellanes sometimes struggles to afford all her medications. She said she is grateful that a local Pfizer sales representative occasionally gives her free samples of Lyrica “to carry me through the month.”
The drugmakers’ grant-making is dwarfed by advertisement spending. Eli Lilly spent roughly $128.4 million in the first three quarters of 2008 on ads to promote Cymbalta, according to TNS Media Intelligence. Pfizer Inc. spent more than $125 million advertising Lyrica.
But some say the grants’ influence goes much further than dollar figures suggest. Such efforts steer attention to diseases, influencing patients and doctors and making diagnosis more frequent, they say. “The underlying purpose here is really marketing, and they do that by sponsoring symposia and hiring physicians to give lectures and prepare materials,” said Wolfe, who directs the National Data Bank for Rheumatic Diseases in Wichita, Kan.
Similar criticisms have dogged drugmakers’ marketing of medicines for overactive bladder and restless legs syndrome. Many of the grants go to educational programs for doctors that feature seminars on the latest treatments and discoveries. Pfizer says it has no control over which experts are invited to the conferences it sponsors. Skeptics such as Wolfe are occasionally asked to attend. The drug industry’s grants also help fill out the budgets of nonprofit disease advocacy groups, which pay for educational programs and patient outreach and also fund some research.
“If we have a situation where we don’t have that funding, medical education is going to come to a screeching halt, and it will impact the kind of care that patients will get,” said Lynne Matallana, president of the National Fibromyalgia Association. Matallana founded the group in 1997 after she was diagnosed with fibromyalgia. A former advertising executive, Matallana said she visited 37 doctors before learning there was a name for the crushing pain she felt all over her body. A decade later, her patient advocacy group is a $1.5 million-a-year operation that has successfully lobbied Congress for more research funding for fibromyalgia. Forty percent of the group’s budget comes from corporate donations, such as the funds distributed by Pfizer and Eli Lilly.
Pfizer gave $2.2 million and Lilly gave $3.9 million in grants and donations related to fibromyalgia in the first three quarters of last year, the AP found. Those funds represented 4 percent of Pfizer’s giving and about 9 percent of Eli Lilly’s.
Eli Lilly, Pfizer and a handful of other companies began disclosing their grants only in the past two years, after coming under scrutiny from federal lawmakers. The message in company TV commercials is clear. “Fibromyalgia is real,” proclaimed one Lyrica ad. Researchers who’ve studied the condition for decades say it’s not that simple.
Since the 1970s, Wolfe and a small group of specialists have debated the condition in the pages of medical journals. Depending on whom you ask, it is a disease, a syndrome, a set of symptoms or a behavior disorder.
The American College of Rheumatology estimates that between 6 million and 12 million people in the U.S. have fibromyalgia, more than 80 percent of them women. It’s not clear how many cases are actually diagnosed, but Dr. Daniel Clauw of the University of Michigan said pharmaceutical industry market research shows roughly half are undiagnosed. People with fibromyalgia experience widespread muscle pain and other symptoms including fatigue, headache and depression.
After 30 years of studying the ailment, rheumatologist Dr. Don Goldenberg says fibromyalgia is still a “murky area.” “Doctors need labels and patients need labels,” said Goldenberg, a professor of medicine at Tufts University. “In general, it’s just more satisfying to tell people, ‘You have X,’ rather than, ‘You have pain.'” While Goldenberg continues to diagnose patients with fibromyalgia, some of his colleagues have stopped, saying the condition is a catchall covering a range of symptoms.
Dr. Nortin Hadler says telling people they have fibromyalgia can actually doom them to a life of suffering by reinforcing the idea that they have an incurable disease. “It’s been shown that if you are diagnosed with fibromyalgia, your chances for returning to a level of well-being that satisfies you are pretty dismal,” said Hadler, a professor at the University of North Carolina, who has occasionally advised health insurers on how to deal with fibromyalgia. Hadler said people labeled with fibromyalgia are indeed suffering, not from a medical disease but from a psychological condition. Instead of drugs, patients should receive therapy to help them “unlearn” their predicament, he said.
Research by the University of Michigan’s Clauw suggests people with fibromyalgia experience pain differently because of abnormalities in their nervous system. Brain scans show unusual activity when the patients experience even minor pain, though there is no abnormality common to all. Clauw’s work, however, illustrates the knotty issues of drug company funding. He has done paid consulting work for the drugmakers, and he’s received research funding from the National Fibromyalgia Research Association, which receives money from the drugmakers.
While Clauw acknowledges that Lyrica and Cymbalta do not work for everyone, he has little patience for experts who spend more time parsing definitions than helping patients. “At the end of the day I don’t care how you categorize this — it’s a legitimate condition and these people are suffering,” Clauw said.
I object to the term “Murky” ailment! We find it in a quote by Dr Don Goldenberg (who, incidentally, confirmed my fibromyalgia diagnosis a number of years ago). I would suspect he used it in reference to fibromyalgia because it is a condition that is not clearly understood – either cause or treatment. To put that into the title of the article implies that the condition doesn’t really exist. I’ll put my 43 years of experience living with it up against that any day!
Indeed, the first paragraph of the article questions the reality of the disease! Further along in the article, it suggests that fibromyalgia is a psychological condition that gets worse when you give someone a diagnosis and name for it. Personally, I think Dr Nortin Hadler needs to have HIS head examined!! When I finally had a name for all the pain I was going through, it was a relief. Now I could start trying to deal with it. I have plenty of self-esteem and a strong sense of optimism. Dr Hadler is trying to bring us back to the “It’s all in your head, dear” place that many of us have fought so hard to get past! I have tried so many things over 43 years to learn to cope with this condition – I have actually tried therapy. Therapy did less than treatment for the actual symptoms. I have one thing to say to Dr Hadler – GO BACK TO YOUR CAVE.
I agree that all the advertising money going to promote these drugs would be better spent in research. I’ve written about that in the past. But I really get my dander up when Perrone suggests that the money would be better spent researching recognized illnesses like cancer or diabetes, instead of a “murky” condition like fibromyalgia. Those other illnesses would still be “murky” too, if not for the investment into their research done in the past. We need to find out the cause of fibromyalgia if we are to find better treatments and a cure. We need research, not advertising for that. But, there’s the paradox. The companies funding the research say they need the advertising to increase the use of their drugs so they will have money to fund the research. It’s a real problem with no obvious solution.
But the amount of money the companies spend on both research and advertising should not be allowed to tait the public perception of this condition!!
Fibromyalgia is real!! Don’t let anyone, even a doctor or a reporter from a well known news organization, make you think it isn’t. Don’t let people like Dr Hadler try to push us back into the Stone Age. We are not crazy or in need of therapy! We are in need of answers to our questions – what causes this, how can I best cope with it and how can I help my family and friends understand it? I agree with Dr Clauw – in the end, it doesn’t matter what you call it, this condition is real and we are suffering!!
I’m sending my complaint to AOL Health & the Associated Press. ( email@example.com
). I suggest you do that, too. Too much media coverage today is aimed at the sensational. Too many highly charged words (e.g. murky) are used to catch the public’s attention. This doesn’t help anyone – least of all those who are suffering with a little known, little understood, life-altering condition like fibromyalgia.
My experience has led me to believe the following about fibromyalgia:
Genetics are involved (my father had similar symptoms and my daughter has fibromyalgia also
Brain chemistry is involved – SSRI’s have helped
Hormones are involved – higher levels of estrogen have improved my pain levels and lower levels have caused the pain to skyrocket, for example